Estimating national prevalence of life-limiting conditions amongst infants, children, and adolescents using administrative hospital data in the absence of a unique health identifier; evidence from Ireland

BACKGROUND: Estimating the total number of children with a life-limiting, complex chronic condition or serious illness has been identified as an important first step in determining how many children might need palliative care in a country or region. Relevant estimates have not been calculated for Ireland, an exercise complicated by the country's lack of a fully operational unique patient identifier in healthcare data. METHODS: This study estimated prevalence of life-limiting conditions amongst children aged 0-19 in Ireland in 2019 and 2024, demonstrating methods in the absence of a unique identifier. Baseline hospital-based prevalence calculated as (estimated) number of inpatients with a life-limiting diagnoses per 10,000 population aged 0-19 in Ireland, 2019 (pre-Covid) and 2024 (most recent year available). Number of inpatients were estimated from discharge-level data under 3 alternative scenarios (E1, E2, E3) adjusting for multiple admissions in the data. In sensitivity analysis, adjusted prevalence estimates further corrected for sources of under-counting in the data. RESULTS: Baseline estimated total prevalence of life-limiting conditions amongst children aged 0-19 in Ireland between 34.8 (E3) and 50.0 (E1) per 10,000 population in 2019; between 32.3 (E3) and 44.5 (E1) per 10,000 population in 2024. In sensitivity analysis, correcting for potential under-counting in the data, adjusted estimated prevalence: between 46.4 (E3) and 66.6 (E1) per 10,000 population in 2019; and between 43.0 (E3) and 59.3 (E1) per 10,000 population in 2024. Prevalence was higher for males than for females, and highest in the age group < 1 for all estimation scenarios. CONCLUSIONS: These are the first estimates of prevalence of life-limiting conditions amongst children in Ireland that have been calculated using Irish-specific hospital data. The estimates are in line with prevalence from other similar-income countries based on studies using similar definitions and methodologies. The findings demonstrate how careful application of transparent methods to routinely collected administrative hospital activity data can yield important findings even in the context of data limitations.